Tuesday, January 29, 2013

DSFF's 2013 Valentine's Bowl-a-Thon

From time to time, parents express an interest in showing their appreciation for my blog... Well, here's the opportunity you've been waiting for!

Our local Down Syndrome Foundation of Florida is having their 3rd Annual Tour of Champions Valentine's Bowl-a-thon event. The Foundation is all about "striking" Down barriers to inclusion and I'd LOVE for you to sponsor our bowling team, Durkin's Dragons!
Simply click this link to sponsor us:

The first year, Durkin's Dragons raised over $1,000, and we'd love to do it again this year! 

The Foundation is run 100% by volunteers so all proceeds go directly to families for scholarships and programs!  It is their goal to raise record money this year so they can support the growing number oscholarship requests and implement some additional programs such as Lose The Training Wheels and iCan Work program. 

Jett has gotten many scholarships from DSFF for his Talktools evaluations, neurodevelopmental evaluations, swimming classes and therapeutic Gymboree classes.

Photo Highlights from previous bowl-a-thons

 Volunteers, in light green shirts, were there to help the families when needed.
Jett was irresistible, as usual, and at one point we had FIVE volunteers "helping" with Jett.
Here's Kathy, Jett's sister, and the "Valentine's Day Bowling Ball of Destruction"
 Alex, Jett's brother, and "Goldie the Demolisher"
 And, Jett's Daddy with "Kermit the Annihilator".

Thursday, January 17, 2013

Walking and Children with Down Syndrome

When do neuro-typical kids usually walk? 
NT kids usually walk with support from 7 to 12 months, stand alone from 9 to 16 months and walk independently from 9 to 18 months.

When do "untreated" kids with DS usually walk?
In general, for an "untreated" child with Down syndrome (one who isn't involved in vitamin therapy or neurodevelopmental therapy), the average age of sitting is 11 months, creeping/4-point crawling is 17 months, and independent walking is 26 months, which is twice the typical age [Winders PC. Gross motor milestone statistics. In: Gross motor skills in children with Down syndrome: A guide for parents and professionals, Woodbine House, Baltimore 1997. p.228.]

When do "treated" kids with DS usually walk?
From an independent poll I took among parents with "treated" kids, it seems that the kids who are in neurodevelopmental programs usually walk from 14 months with the average being 18 months old. By 24 months, all the children where walking unless other issues were found to impede progress. If your child is treated and you'd like to take this poll, please let me know.

In my opinion, if your child is involved in vitamin therapy/biomedical intervention and neurodevelopment, you should expect him to walk by 24 months. If he doesn't, I think you would need to explore the possibility that something--maybe fluid in the ear, vision problems or structural issues are impeding his progress. Jett first pulled to stand at 10 months and was perfectly 4-point crawling/ creeping by 13 months. But, he didn't stand up on his own until 30 months! (When he also occasionally took independent steps.) At 34 months, Jett finally stood independently for 11 seconds and took 3-5 steps. I hope that you learn from my mistake and take this issue seriously instead of listening to your PT who says, "It's just Down syndrome. There's nothing wrong with him," as Jett's PT said.

If your child is not walking by 24 months, check:
  • Fluid in the ear effects balance. See posts Keeping Nasal Passages Clear & Mouths Closed and Protecting Your Child's Hearing for details on how to address these issues.
  • Issues with vision problems such as convergence (eyes working together) can cause vision problems that can mess with depth perception which can lead to fear of walking or inability to see well enough spatially to walk correctly. See Improve Your Child's Vision
  • It could be structural problems. One mom found that her child had a problem in his spinal cord (unfortunately not until about 4-5 years old). Once that was fixed, in his case through surgery, he could walk. For Jett, we've discovered concerns concentrated (but not limited) to the base of his brain and the small of his back. Jett's issues are being address with cranio-sacral therapy and gentle, but purposeful manipulation through a chiropractor that Jett's neurodevelopmentalist, Kay Ness recommended. You can find a well trained practitioner near you at SORSI.com. (This issue was also why Jett dragged his left leg when he army crawled, which was fixed through cranio-sacral therapy/chiro/acupressure.) With these adjustments, Jett's balance and walking is much more solid. The day of the first session, he went from independently standing for 11 seconds to 32 seconds. After the second session, his count of independent steps doubled from 3-5 in a row to 10. (Although Jett counts the dive into our arms as #11.) His chiro says that once the corrections are made to his lower back, he'll be able to straighten up when walking (he leans forward) and his feet (that are turned kind of inward when he walks) will also straighten. As for the turned feet (he rests his weight on the inside of his feet rather than the whole bottom of his feet), Jett's ND said the $100+ ankle-high inserts that Jett's PT recommended wouldn't correct the core problem and suggested that particular chiro instead.  I wish I would have more aggressively addressed these problems at 24 months instead of 34 months! Again, I hope that you learn from my mistake and take this issue seriously. Such problems at the base of the brain are discussed in this article: Discovery Of Altered Cerebella In Those With Down Syndrome Accounts For Poor Motor Skills, Coordination
  • Leukemia--not to scare you, but leukemia does effect balance. One child w/DS kept falling even at age 3. The mom was surprised to find out that her child's balance was a side effect of leukemia. Since our kids have a much higher rate of leukemia than the typical population, you should get regular blood tests to rule this out.

Why is it important to get your child up and moving?

Physical activity helps to mold the structure of the brain, according to John D. Polk, an associate professor of anthropology at the University of Illinois at Urbana-Champaign. It's during exercise that high levels of substances which promote tissue growth and health, including a protein called brain-derived neurotrophic factor, or BDNF is created. These substances are known to guide and facilitate brain growth. Read more

Steps for supporting walking

  1. Improve Muscle Tone 
  2. Deep Pressure Tactile Therapy will help him be able to "feel" his limbs better thus will allow him to better control them.
  3. Your baby needs to be crawling first. Learn how to Teach Your Baby to Crawl Why? Because Crawling is More Important than Sitting, Standing or walking.
  4. Once he has perfected 4-point crawling (also called creeping), try these exercises to support walking:
  • Sing "The Grand Ole Duke of York" and encourage him to stand up whenever the song says "up" and sit down when the song says "down". Keep his feet in line with his hips by holding his feet down and in line if necessary. Jett loves doing this and will initiate this exercise on his own. Try to do at least three times a day. (This is also helpful in diverting tantrums.) It builds leg muscles. Here's Jett's favorite version on YouTube. It has the lyrics on the screen as well.
  • Stand him up against a wall and count with your fingers, out loud and with enthusiasm, up to one hundred. At each ten, I tickle Jett. He loves this and learned to count as an added bonus. :) Then have him take a step or two forward. (Lunging doesn't count, but give him a hug anyway.) This exercise helps with balance.
  • Check out these exercises to help our kids prepare to walk from sheknows.com. Stairs and a balance ball are among the tools she uses.
5. Non toxic toys that support walking efforts:
6. Reward each step your child takes with shoes that squeak or light up when walking. Or you can enthusiastically count each step. For Jett on long walks, I sing, and every time he stops, I stop singing. He thinks this is so funny especially when I sing slowly if he walks slow or sing fast if he walks faster.

    Related Posts

    Improve Your Child's Vision
    Promote Walking: Are Treadmills Good?